RSV and Rollerskating!

LJ’s last scan showed his tumor increased by 13%. The time following news like that is always odd. A mix of pain because the monster just won’t get out of my baby’s head and joy because LJ is completely symptom free. Well kinda. For a week or so after the scan LJ was showing symptoms, eyes turning in more, leg pain and stiffness, and issues with sleep. Joshua also had to travel for work the day after the scan results so we started off February with a bang.

Emmaleigh had her pinewood derby race so we spent the day shopping, then ice cream at Greaters, competed in the Derby, and ended with some late night Chick-Fil-A! Ems (and Daddy) won 2nd place in the Tenderheart division, but my little Ricky Bobby was so disappointed she didn’t place first overall. Lol!

The next day we went to church and to the movies to watch Frozen 2 again but this time with Courtney! When Daddy has to leave, life can start to turn into a vacation!

I took the kids rollerskating and was fully prepared to watch Emmy skate while LJ sat around and watched a screen or fought with me to play arcade games for the two hours we were there. We walked in, got Em all set up and LJ wanted to skate too! So I rented him some skates and a walker thing and he LOVED it! It was both of their first times but they were so brave and fell in love!

Joshua came home and LJ was SO excited. He had asked every single day since he left when he was coming back! There was snow on the ground so we went to the park with our sleds to have some fun! We ended up taking a snowy walk to check out a little waterfall!

The next week was full of a lot of lazy days as Emmaleigh recovered from a cold. The kids happily played together and I really soaked up just watching and listening to them interact and pretend. They played Peter Pan, robots, and legos. It’s so sweet to hear LJ ask his sissy to play and most of the time she really does say yes!

Joshua cut LJ’s hair the day before his two years. All I could think about was the day after LJ’s diagnosis when a hair stylist shaved his entire head. I wasn’t there but Joshua asked for shorter on the sides and just a little off the top and she cut his hair the same length everywhere. It normally would not have been a big deal, but when your child is diagnosed with cancer the day before and now he looks completely different without much hair at all, it was. Back then I felt like he looked like he had cancer. It was just one more thing I couldn’t control at the time. Joshua had done a great job this time and LJ has some cute hair to wear two years later!!

We celebrated LJ’s two years post diagnosis all day long February 13th, 2020 and you can read all about that amazing day here!

Next up was Valentine’s Day. A holiday Joshua and I have never really celebrated and now that it was the day after d-day we really didn’t like it but Emmaleigh loves it so celebrating is an obvious choice!

LJ wasn’t feeling the greatest though. He had a yucky cough and was beginning to show all the symptoms from his sister’s cold. We found him a mask and took him to the homeschool Valentine’s party anyways. I knew it wasn’t the best choice and really did feel bad for exposing others to LJ’s germs but him missing any holiday celebration is really hard when carrying the weight of a terminal diagnosis. He tried his best to have a good time at the party. Emmaleigh had a blast. And we had a good time watching them pass out and receive their valentines and treats!

We got a surprise visit from Aunt Kyle and Remy Valentine’s night! We pretty much spent the weekend just hanging out because LJ was feeling so crummy. They still had a lot of fun playing together in the spurts that’s LJ did feel like playing!

The whole weekend we couldn’t decide if we should take LJ in or not. We were pretty sure he had whatever bug Emmaleigh had and we were hoping it would just run its course. On the fourth day of fevers and a terrible cough we brought him to the emergency room. His temperature upon arrival was 104.5 and they started a wide span antibiotic right away due to LJ having a medical port.

A sweet service dog visited him and he started to feel better.

They decided to admit us. Part of me was glad that LJ would have no choice but to rest and would be getting IV fluids. The other half of me really thought they were keeping us because they weren’t sure if I’d bring him back if he spiked another fever! Regardless we learned that Dayton Children’s was a great hospital that was more than willing to work with our Cincinnati team! We also found out that our Ohio village is amazing. There were so many people willing to help with Emmaleigh or anything else we needed! She even got to go skating with her friends!

LJ ended up having RSV which is very common respiratory virus. He got lots of rest at the hospital and only had to stay one night. The next morning he was up and dancing waiting on the doctors to release him.

We came home and rested for the next couple of days so that we would be all healthy for the Dragonfly gala! We stayed at the Cincinnatian and Emmaleigh thought it was so fancy and fun! All of us got ready (which was INSANE) and we took the street car to the Music Hall! Emmaleigh was so ready to dance the night away and as soon as the program was over, she did just that! LJ had fun visiting the penguin but then wanted a screen and sat at the table for the rest of the night. He just wasn’t in the mood for a good time. Lol! The rest of us were, he was content, and we all had a blast!

We left the gala and took the streetcar back to our hotel. We shared it with our friend Chase who is a childhood cancer survivor and a Dragonfly. He was also the emcee of last year’s gala. He spoke this year too and when he says “hi, I’m Chase a childhood cancer survivor.” It chokes me up every single time. My biggest dream is that LJ and every other childhood cancer warrior would be able to grow up and use those words. That street car ride also included many belly laughs from LJ as Chase did everything to make LJ smile! It’s a memory I will cherish forever.

I thought as we left last year’s gala how hard it would be going to galas in the future without LJ. Would I be able to go and hold it together? I’ve seen other warrior moms do it and it’s so inspirational. Those women at beyond strong. It was amazing to get to go with him again, even if he wasn’t in the mood to party!

We ended the month with myself going out of town for a very special baby shower while Joshua took LJ and Emmy to the clinic appointment to begin cycle 23 of the clinical trial! Normal appointment. Port access, blood draw, EKG, clinic evaluation, and waiting on trial meds. Only this time there was an announcement that our beloved oncologist would be leaving Cincinnati Children’s in July. The woman who called me at 10pm her time because it was a good time for me in Alaska. The woman who has taken DIPG under her wings to make a change in the childhood cancer world. The woman who has reassured me that she would handle the monster in LJ’s brain and I only needed to worry about the outside. The woman who cares so much to bring in a new format of looking at scans over time to ease my mind about the last growth and how LJ’s tumor has behaved in the past. The woman who engages with Emmaleigh every time she steps into our clinic room.

The woman we moved back across the country to be closer to was leaving.

Dr. Fouladi is the only doctor I have ever trusted.

The good news is she is only moving to Nationwide Children’s Hospital in Columbus, Ohio. Instead of an hour south, she will be one hour east. We are madly in love with the rest of our team at Cincy as well, but there is something very special about our neuro-onc! This will be a very tough decision that I’m not even 100% sure it’s possible. Thankfully, we do not have to decide anything for a few months.

We ended the month with getting a second opinion about LJ’s vison needing correction. The ophthalmologist LJ was seeing at Cincy had sort of written off his vison problems as tumor related but my mama gut said otherwise. Again, Fouladi was so supportive of us seeking another opinion and encouraged it for the sole purpose of easing our minds. Joshua took him to an optho at Dayton Children’s who looked at LJ’s eyes without full disclosure of his tumor and prescribed him eyeglasses. As he was giving the prescription he asked if LJ had ever had an MRI (he would suggest one for this age as there could be another reason for the issues with vision), Joshua told him he has one every 12 weeks! He flipped through his notes and saw that LJ had DIPG but didn’t seem like he knew what that acronym meant. Regardless of why LJ was struggling to see it’s so nice to have doctors listen and support parents when they know something is just off with their kiddo!

They left the eye doctor and went to pick out LJ’s frames. I wasn’t there so facetime it was helpful! Thank you technology!

February was another busy and beautiful month for our family. We are so grateful for quick healing of our babies this month, unexpected time with friends, and the wonderful tribe we are growing here in Ohio!

Published by Christina Barnes

I am a daughter to a King!
Married to the man of my dreams!
Mama to a 8 year old celiac princess and 4 year old brain cancer warrior!
My family loves Jesus, serves our country, homeschools, doesn't eat gluten, and fights brain cancer!
View all posts by Christina Barnes